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Petition update

Lyme Disease Overdiagnosis in a Large Healthcare System

Carl Tuttle

Hudson, NH, United States

Mar 1, 2019 —

The three letters below concern diagnostic testing for Lyme disease and recently a letter surfaced written in 1988 by the CDC admitting that the ELISA is virtually useless for the early detection of Lyme yet we have been using this screening test for 31 years! The letter was archived in the Utah Valley University Digital Collection of Willy Burgdorfer research material.

Why is there no concern for the false negative Lyme disease lab test results? The entire Tuttle family progressed to late stage Lyme all of us with false negative Lyme disease tests as seen by Dr. Sam Donta.

The mishandling of Lyme disease here in the US is an absolute disgrace and the study below is no exception.

I would like to point out the following case study from Stony Brook Lyme clinic. I understand the patient received thirteen spinal taps, multiple courses of IV and oral meds, and relapsed after each one, proven by CSF antigens and/or PCR. The only way this patient (said to be a physician) remained in remission was to keep her on open ended clarithromycin- was on it for 22 months by the time of publication.

aDepartment of Medicine, bDepartment of Neurology, and cDivision of Infectious Diseases, Albert Einstein College of Medicine, and dDepartment of Neurology, State University of New York at Stony Brook, New York, NY., USA

Eur Neurol 1995; 35:113–117 (DOI:10.1159/000117104)

Abstract

We report an unusual patient with evidence of Borrelia burgdorferi infection who experienced repeated neurologic relapses despite aggressive antibiotic therapy. Each course of therapy was associated with a Jarisch-Herxheimer-like reaction. Although the patient never had detectable free antibodies to B. burgdorferi in serum or spinal fluid, the CSF was positive on multiple occasions for complexed anti-B. burgdorferi antibodies, B. burgdorferi nucleic acids and free antigen.

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Dr. Neil Spector, Oncologist from Duke University required a heart transplant after his Lyme disease went undiagnosed for years. His serology was repeatedly negative.

As you should know Dr. Bryant, humans do not produce detectable antibodies to Borrelia for 4-6 weeks after a tick bite. Early detection and prompt treatment leads to better outcomes. Strep throat progresses to Rheumatic fever when left untreated but RF has been virtually eliminated in North America due to rapid culture tests for strep in the primary care setting. It is time to abandon serology for 100% reliable early detection methods.

Until we have direct testing methods to detect Lyme disease in all stages of disease you cannot make the statement that “Lyme Disease is Overdiagnosed.”

On Feb 28, 2019 Carl Tuttle wrote: “As you should know Dr. Bryant, humans do not produce detectable antibodies to Borrelia for 4-6 weeks after a tick bite. Early detection and prompt treatment leads to better outcomes.”

Per the Utah Valley University Digital Collection of Willy Burgdorfer research material, please see the 1988 archived letter below from Albert Balows, Assistant Director of Laboratory Science at the CDC written to Dr. Michael Skeels, Director of Oregon State Public Health Laboratory.

Evaluation of the ELISA (First line screening test for Lyme) showed that only 13-16% of patients with a bulls-eye rash have positive serology in the first three weeks after onset of symptoms and only increases to 27% 3-6 weeks after onset of illness.

Because of the low sensitivity of the test the diagnosis of Lyme disease in endemic areas should depend primarily on the clinical presentation of the patient.

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So for 31 years we have been using a useless first line laboratory test to screen for a disease that is destroying lives, ending careers while leaving the patient in financial ruin.

How many Lyme patients have been harmed by these faulty/misleading antibody tests and told they do not have Lyme disease? The US Centers for Disease Control is 100% responsible for this epic failure.

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